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Being referred to surgical team and feeling overwhelmed.

Fri Nov 12, 2021 9:59 am
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

Hi all,

I have UC, and haven't had surgery yet. It's been a rough year - I was taking Entyvio, but it caused me to develop drug induced hepatitis. I've been on Pred for the last year, and can't seem to come off it. I'm seeing my consultant next week, and he's told me I have one biologic med left, Stelara, but my body might not be able to take it after what happened with Entyvio, so I'm being referred to the surgical team just in case. At present, I have pretty severe inflammation on the right side of my large intestine, but I also have pancolitis, so I know it can spread to any area. Can anyone give me any idea of what sort of surgery I might be looking at, and if there are any questions I should ask my consultant?

Thank you.

Sat Nov 13, 2021 12:23 pm

Horntown .... If your surgeon recommends to remove the infected section of your large ,then you may end up with a stoma . Ask about reverse possible . I had a similar illness for 19 yr ,on everything possible and ended up with a short small intestine ( it had spread from the large to the small) ..I had an ileostomy done and anal resection. After 2 years ,I'm happy it's all over and I lead a normal active healthy life . 
live known many that had an Ostomy ...reversed ...Ostomy again ...reversed and each time they removed more and now after many surgeries they have a ileostomy. If you want to be done with your illness ...then let your surgeon know .If you don't like him ...seek another . 
I am now free from pain , embarrassment and am normal now . Life is good ...trust your gut 

MeetAnOstoMate - 27,707 members
Sat Nov 13, 2021 2:58 pm

I empathize with what you are going through.  You have inflammation in the right side of your colon and you have pancolitis.  Your options depend upon whether or not your colon's inflammatory process can be healed with medication or whether it is no longer manageable with medication.  Once the colon's inflammation is severe and beyond the scope of medication treatment, surgery to remove your colon is necessary.  There are procedures after a colectomy (removal of your colon) for creating some kind of continent reservoir, and you can discuss those options with your surgeon.  If your colon is the source of all the inflammation and disease process, and if it cannot be ameliorated with medication, removing it will also remove the disease process.  Your healing can then begin.

The important thing to try to understand is what treatment (another medication trial vs. surgery) will provide you the best and most comprehensive relief from suffering and return to health?

That is what you need the most now, a chance to heal and be able to live your life fully.

I think it is difficult to think through your options when you are in pain and suffering, but if you have any further questions, feel free to reach out.

everowell

Sun Nov 14, 2021 8:09 am


Ritz wrote:

Horntown .... If your surgeon recommends to remove the infected section of your large ,then you may end up with a stoma . Ask about reverse possible . I had a similar illness for 19 yr ,on everythi...

Thank you so much. I'm so glad to hear that things have improved for you. 

Sun Nov 14, 2021 8:12 am


Mme. Fleurie wrote:

I empathize with what you are going through.  You have inflammation in the right side of your colon and you have pancolitis.  Your options depend upon whether or not your colon's inflammatory pro...

Thank you so much. I've had UC for 10 years, and have just about exhausted all the meds out there. I have one biologic left, Stelara, but have been taking steroids for the last year. I should know more about my options this week, as I have an appointment on Tuesday.

Sun Nov 14, 2021 4:24 pm

Hi Horntown.  Without using buckets of words, please accecpt my simple thought that an ostomy is not the worst thing one might have to live with.  Lots of folks consider their new digestive hardware a blessing rather than a curse.  Please let us know how you make out.

Respectfully,

Mike

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